Sometimes the term “deaf” feels like a dirty word.
Before coming out of the “Deaf closet” in my young adult years, I grew up never knowing how bad my hearing really was. As a child, my Mom noticed that I was always dancing a few beats off the music (unaware that I was merely counting internally) and assumed I was simply eager to be on stage. As a teenager, my family and friends reveled in the constant stream of “dumb blonde” material I provided, never understanding that I was simply missing most of the conversation. But after my hearing rapidly decreased in my late teenage years, I finally went to an audiologist appointment and found something shocking: I had severe, progressive hearing loss.
The term “high functioning” is often offensive when used in the world of disabilities, but many people have described me as just that in the Deaf community. In college, I seemed to excel beyond belief at the tender age of 16, and made the Dean’s List with 4.0s right away. Even though I appeared to outrival the best and brightest, I was secretly riddled with anxiety and nearly crippling levels of depression. A typical hour in a classroom involved whipping my head around to read lips in a frenzy (racing to find the professor, the inquisitive student in the back or the mumbling teacher’s aide), without taking too long to write notes or look away for fear of losing entire chunks of the lecture. Instead of connecting with friends, soaking in the educational experience or learning authentically through the listening process, I constantly felt like a fraud: a dumb kid who was somehow earning good grades.
It wasn’t until I recently had an interpreter at the National Hands & Voices Conference in Maine that I realized how different my collegiate years could have been. No matter how much other people believe my life to be an example of “success” with hearing loss, I am saddened and horrified to know how much I truly missed. If I had just been able to speak up for my needs, request the proper resources and embrace every aspect of my being, perhaps I wouldn’t have settled for shards of communication and unfinished memories, without understanding that we all deserve to be part of the life we’re living.
Yes, it’s true that I am an expert lip reader and have an unnaturally clear voice that is not congruent with my audiology reports. But does that mean I am struggling any less with the same hardships, problems and perennial oppressions of other deaf women, men and children to date? Nope. The worst disservice that we can do to youth today is failing to recognize that struggles aren’t always displayed on the surface for the world to see, but rather hidden inside. It’s up to us as parents, siblings and peers to dig deeper, ask more questions and always try to lend a helping hand (even if it doesn’t seem like one is needed).
One of the hardest parts about being diagnosed with progressive hearing loss in young adulthood is that my family, friends and colleagues may not come to accept this newfound identity. What used to work in terms of our communication may no longer be viable, and suddenly, the rules are changing. Cell phones that formally presented a link to past pals or distant business connections, are now a source of angst and apprehension as I imagine struggling through dialogues and agreeing to things with which I cannot hear. Nights out on the town in dimly lit bars or noise-laden restaurants are now an almost useless attempt at socialization unless my co-conversationalist knows American Sign Language.
It has taken me until the age of 24 to finally stand up for myself and say the following: I am Deaf. You may call me “hard of hearing” because you can understand me, but I need you to look me in the eye, speak clearly and use sign language whenever possible so that I can reciprocate the understanding. You may call me “high functioning” because I’m deeply invested in the business world and few co-workers know I can’t hear. But if I am provided with interpreter services, close captioning or a healthy dose of patience, I can finally enjoy myself in the way that everyone else is allowed.
Now that my youngest daughter has been diagnosed with hearing loss as well, I am finally able to see that resources, responsiveness and the relinquishment of labels is the key to a complete child. The only thing that labeling our already minute community achieves is segregating ourselves even further. It doesn’t matter if you use sign language, oral methods, cochlear implants, hearing aids or anything else. No matter what means we choose, which cultures we embrace or how easily we blend into the so-called mainstream world, we are all connected, we are all unique and we all can be described with one thought-evoking and strength-inducing word: Deaf.
But it’s only after embracing this often-avoided term, that I can appreciate everything else that defines me. I’m a mother, a wife, a writer, a woman, a ballerina, a Hands & Voices board member, a chocoholic, and a perfectly imperfect person. I refuse to talk on the phone to those who aren’t my sisters and mother (who’s voices I can easily comprehend), hate reading the lips of anyone with a mustache, and want to raise my daughter to speak up for herself no matter what language she chooses to use. My life may be different now than it was before, and the guidelines may be constantly changing. But no matter what happens or with which label I choose to call myself, there is one thing we all can do to be the perfect role models for our kids: speak up.
Be who you are, ask for what you need and never be afraid to change the rules as you go.
And hopefully in the end, the rest of the world will catch up with us.
Editor’s note: Bailey Vincent Clark is the homeschooling mother of two girls (Kinley and Follin), a lifelong writer, dance teacher and active advocate in her area.
QUICK LINKS
Home
